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Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

How Would You Describe Fibromyalgia To A Close Friend Or A Family Member?

How Would You Describe Fibromyalgia To A Close Friend Or A Family Member?

posted about 6 years ago
A MyFibroTeam Member said:

When I was diagnosed in July, the rheumatologist explained it that the spot in the brain that sends signals to the body that there is pain is malfunctioned. He said that they can even see now on an MRI with fibro patients. The heavy activity shows up in that section of the brain.
Made sense to me...

posted about 6 years ago
A MyFibroTeam Member said:

Body feels like I've just been hit and rolled over, again, and again, and again, then on the last roll-over, they sucked out the part of the brain used to speak in clear, concise sentences and is responsible for memory, Eyes feel I need to have a humidifier installed even in the middle of summer when the humidity and dew points reach 70% with no rain in site. Add onto this the cervical and lumbar spine issues I have...just to name a few, and they MAYBE WOULD HAVE A NICKELS WORTH of what it feels like,

posted about 6 years ago
A MyFibroTeam Member said:

Tell them to go without 3 days sleep,no naps then try to do even daily chores, they wont be able to bc they will have aches and pain and their body will act up. They won't be able to function. Fibro is even worst.

edited, originally posted about 6 years ago
A MyFibroTeam Member said:

If they have had the flu bad tell them it's something like that only worse. I've shared some of yall's stories with my family and that has really helped them to understand.

posted about 6 years ago
A MyFibroTeam Member said:

Amelia, google Dr David Brady (The Fibro Fix), or Dr Mark Hyman...they are functional physicians who treat fybro. Based on their clinical treatment on thousands of Fibro patients, you can get a good core description. There is still little if any concensus re what causes Fibro and because it presents as a constellation of symptoms all over the body, and debilitating non pain symptoms like flu or brain fog, getting what you are looking for appears not to be very scientific.

There is some research that may show inflammation deep in the brain has made it impossible for nerve pain messages to turn off. This inflammation may be effected by stress, trauma, or lifestyle choices in our environment. Another physician from UCLA in Calif , Dr St Amond, believes the pain and bodily discord is caused by calcium phosphate nodules, hypoglecemia and dietary sensitivity (in some). Dr St Amond treats people very specifically. I have just in the last five months begun working with his protocol. Jury is still out, it is not widely accepted, but there are thousands of patients who claim success. MIT Dr London wrote 35 page paper studying Dr Amond. Dr London says the treatment works for some, but not for reason Dr Amond claims.

The only thing for sure it would seem, is Fibro is a syndrome found in thousands of people. It has finally been recognized in last couple of years by Social Security Disability. There is no cure, Fibro cycles from bad to worse daily, weekly monthly, can last lifetime and can also become quite tolerable. Some say theirs has gone away. It is very much like Chronic Fatigue Syndrome. Because Fibro is similar to, and can overlap with
Lupus, Thyroid Hashimoto Disease, Metal Poisoning, etc it is important to get proper diagnosis if you can.

My description of my own Fibro: bodywide pain (sometimes sharp, sometimes like dragging cement inside my veins,)flu symptoms without a fever, insomnia, gut pain with slight fever and sweats, brainfog,
swollen knees and feet, arthritic, headaches to migraines, dizzy and nausea....everyday is debilitating pain and I am in bed 75% with all other symptoms taking turns to crawl in with me....the worst is when they come at once or one after the other....this last bout kept me in bed three weeks. So! There ya go!

posted about 6 years ago
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